To Hannah – the night before Christmas

Eight years ago this Christmas, when I was six months pregnant with you, my first born child, my sister (your aunty) gave me a blank book. She had had her own first child 7 months earlier, and in the front of the book she wrote that it was a journal for us to record those special early moments, as we embarked on the greatest adventure. I did write, often and rambling, full of joy and awe and absolute happiness, for the 3 months before and two years after your birth. I made it a tradition to write on the eve of your birthday, of the new year, and of Christmas, and as many times as I could in between, trying my best to capture those precious moments of your growth and of that great adventure.

And then there was a gap. Between your 2nd and 3rd birthday. A year in which I was simply unable to bring myself to open the book, far less to write in it. My entry for your 3rd birthday is still painful to read. It tells of dark and difficult times, the year of your diagnosis. After that entry, the journal ritual became a little bittersweet: birthday entries about how incredibly loved you are and how captivating your smile is, but beneath that, the inevitable sorrow of all the things I couldn’t write. All those things I had assumed I would be recording, but wasn’t. Yet I kept writing. I felt like to stop would be to admit some kind of defeat, or to suggest that somehow now your growing life mattered slightly less to me, which couldn’t have been further from the truth. Besides, I clung (cling) to the hope that one day you would (will) read it all yourself. But when the completion of the pages happened to coincide with your 5th birthday, I have to confess I was relieved. The ritual could stop. I could stop spending the late night hours before each birthday trying to scribble happy thoughts through blurry tears and smudging ink.

There are no pages left to fill in that journal, but it is Christmas Eve, and I want to write to you again. In the almost three years since I last wrote in that book, I have written plenty for other people about you, about Rett, about daily life and endless challenges. A lot of the time, it’s not good. Much of the time, it’s about lost hopes and dreams, things that have not happened or things I wish could. It’s been about battles, losses, things unlearned and things out of reach. But this is not about those things. This is about things learned, things grasped, things gained. Things found and things created . This is not about Rett Syndrome, this is about you, my Hannah, and how proud I am to be your mum.

A few days ago, I stood in a room at the wedding reception of two remarkable people whom I would almost certainly never have met had it not been for you. One of whom was one of the very first people to come into our ‘special needs’ lives, long before diagnosis, and for you it was love at first sight. You still fold into giggles when she’s in the room and have difficulty remembering to breathe through your all-consuming smile whenever she’s around. She loves you right back. The other, with whom you also share a love at first sight bond, now sees you every day in your new school, where you share a classroom with their son. Together, they rank amongst your most loved and my most respected people. It was a genuine privilege to share their wedding day.

I looked around the room at them and at their guests, and realised that these people, all remarkable, are part of my life because of you. Most of them either work with, parent, (or both) children with special needs. Most of them ‘get it’. They are people with whom I may have nothing else in common, yet that one connection runs deeper and pulls us closer than innumerable other common factors could. It’s humbling to realise that you have brought us together, that I am dancing to S Club 7 and posing in a photo booth with some of the best people I have ever known, with people I respect and trust completely, because of you. Not just because they, like me, have a child with special needs of one kind or another, but because they, like me, love you.

It is even more humbling to know that your influence and inspiration is far from contained within this room. This moment of celebration comes at the end of a year in which you have inspired £10,000 worth of fundraising and innumerable new friendships, contacts and supporters: an 8 year old so moved by your story that she painted and sold 100 stunning canvases; a primary schools whose students, parents and staff staged event after event to raise awareness and funding; the third annual event hosted by a renowned hypnotherapist who, until he heard about you, had never heard of Rett Syndrome, but now supports us repeatedly and wholeheartedly; two secondary schools inspired by your story to choose Reverse Rett as their annual charity; old friends, new friends and friends of friends as far flung as South Africa hosting coffee mornings, quizzes and picnics with your smile as their backdrop. I could go on and on.

I stood in that room, thinking about all these people and about you and, I admit, felt overwhelmed. And then I looked at your dad. This man who is willing, enthusiastic even, about dancing opposite me. Who still, despite all that has happened and all that has not happened, honours his promise to tell me that he thinks I am beautiful and loves me every single day. Who carries you up the stairs every evening and down again every morning, even though his back is buckling. Who moves into your room almost every night when you wake, manic and shouting, and stays with you until you fall asleep. Who climbs onto an exercise bike in the living room every night and adds another 11kms to his final 4040km target, to raise funding for research for your future. I look at him and wonder, would I ever have known the infinite depths of his strength and courage and gentleness, had it not been for you? Would I ever have seen him the way I do had I not seen him look at you the way he does? Would I have known what he, and I, and we, were capable of?

When I got home, I crept upstairs to look at your sleeping brothers. The ones who, although younger than you, look after you and look out for you like older brothers protect their little sis. The ones who read stories to you, who wish you a ‘lovely day’ as you head off to school, who save things to show you and share with you when you get home again, who call ‘mummy, look!’ excitedly when you walk across the room or point or make a new sound, who say that they wish they could be superheroes so they could make you be able to talk to us. I look at them and wonder, could we ever have taught them this kind of love without you? Could any classroom educate them better about empathy and understanding than you do? Would they be brothers like this if you weren’t the sister you are?

I could go on. Because it seems to me that there are very few people who meet you who do not love you and who are not touched and inspired by you. When I started writing that journal, eight years ago, I had dreams and hopes for my daughter, as all expectant parents do. When you were diagnosed, it felt like so many of those hopes and dreams were crushed. You might never read a book, sing a song, have a relationship, become a mother, travel the world, make your own choices. And I’m not for one second saying that any of the above makes up for the loss of those hopes; I still want all of those things for you, I still want you to be free and to be released from Rett Syndrome. None of these things means I hate Rett syndrome any less. But one of the hopes I had for you back then is a hope that you have already fulfilled tenfold: you have made me proud. In ways and in measure I could not have imagined back then. I hoped also that you would love, and be loved. Little girl, you love fiercely and freely, with every fibre of your being, shining through your eyes and your infectious smile; and really, I do not think you could possibly be more loved than you are. After all, what’s not to love?

When I flick back through that journal, I lose count of how many times I apologised for being ‘schmaltzy’ in my writing, or how many times I followed that apology with yet another outpouring of, well, schmaltz. I would apologise for this too, except that it is Christmas, the season of schmaltz, so in true Christmas spirit, I end on a quote, with a slight twist. The saying goes ‘I thought I would have to teach my daughter about the world, turns out I have to teach the world about her’. This has been true enough in the past four years, but it is also true to add that it turns out that my daughter has had, and I suspect always will have, to teach me. So, Merry Christmas, from a very proud and humbled mum, to the best teacher I’ve ever had. My Hannah.

One Comment

this moved me to tears. So true is it that the love from children with Rett sybdrome is without reservation and more richly appreciated because of the inevitable sadness in the heart of the recipient.
The words of the Thomas Covenant novels come to mind now, that I as a grandparent have a 9year old with Rett–“something there is in beauty”